A Family Learns to Follow

Written by Dianne Gray

Many of us remember dancing as teenagers, first learning about the concept of "leading and following."  Never did I think that the concept would apply to my own life with such accuracy until December, 1995.  That was when my son, Austin, just three weeks shy of his 4th birthday, was diagnosed with Hallervorden-Spatz Syndrome.

Since that time Hallervorden-Spatz Syndrome has taken away my son’s ability to function unaided.  He is unable to use his arms or legs and cannot speak any longer.  Clearly, one could say that this disease is "leading" and at best, Austin, his three-year old sister, Christina, and I are "following". As we adjust to a skill or function disappearing, changes in Austin’s body require us to adapt yet again as something else vanishes.  During one three month period, Austin lost the ability to use his hands and I felt this disease could surely not produce anything else more heartbreaking as I watched him struggle to play with his toys. We adjusted as a family learning to feed Austin, yet we were still so grateful to communicate with him, hearing his laughter and his jokes.  Listening to him trying to read brought immense joy.

However, Hallervorden-Spatz Syndrome would once again "lead" taking away  Austin’s ability to talk within the last six months.  Again, we would "follow" learning to receive incomprehensible amounts of pleasure from hearing him laugh at whatever humorous event occurs at that moment.

So although we have learned to be followers, trying to keep in step with Hallervorden-Spatz Syndrome, we have also learned to lead, vowing to never let this disease remove joy and love from our lives.